The Little Engine that could…until it couldn’t

Bodie’s appointments at Stanford went GREAT! As I mentioned, they can’t see everything with a CT scan that a cath will show, but between the blood work and what they COULD see on the CT scan, they’re very happy with how Bodie looks. As long as continues to look good clinically from the outside, we don’t have to go back until winter break for a cath and biopsy!

I should have known it was going to be a good trip when we got off the airplane in San Francisco and Bodie was moving so quickly I could barely keep up with him through the airport. I was reminded of the last time we flew into SFO and we ended up driving home 3 months later. I had to stop to take a comparison picture and was blown away just looking at the picture of him from last year.

I don’t remember him looking that sick.

Dusk doesn’t remember him looking that sick.

Our friends remember seeing him he week before and he looked fine.

But pictures don’t lie.

His decompensation happened so quickly – in a matter of days.

I remember once hearing that the problem with kids with heart defects is that they’re really good at compensating – until they can’t anymore. And they go downhill really fast when that happens. And that clearly was what happened to Bodie last June.

After all of his appointments, we hit up some of our favorite spots, including this random humane society park with this huge heart sculpture.

We have stopped there every time we’ve gone up!

We also went to this hill, which doesn’t look big.

But it is VERY STEEP. Last summer, during transplant recovery, I worked really hard to convince Bodie to try to walk up it once. He grumbled the whole way. But two days ago, he and I walked up it, and then down it, and then he asked me if we could run up it. So we did – and you guys, I could not even keep up with him!

It’s incredible to see the growth he’s had in the last year, but really in the past few months. It’s as though his body is finally settling into life with this new heart.

We still have a big open question of treatment for his platelets. His platelets on Thursday were actually 150K, which is the low end of NORMAL! So he is definitely responding to the injections. I think our next step is getting him to some degree of consistency so we know how much medication he actually needs, and then we can discuss trying to switch to the oral medication. Switching him to the oral medication will mean stopping the statin he’s on, and not every patient responds to the same way to the oral medication – and it comes with lots of dietary restrictions. So lots of hurdles to get through first. So for now, we’re still looking at weekly visits to Radys for lab draws and injections. But at least his platelets are improving, which means we’re in much better shape than a few months ago!

The most meaningful part of our trip by far was the opportunity Bodie and I had to go to the Pathology department and see Bodie’s old heart!

LPCH is one of the few hospitals that will allow transplant patients the opportunity to view their old organ, hold it, and ask questions. The doctor who led our session was incredible and had studied up on single ventricle hearts, so she was able to really explain to us all the ways Bodie’s heart was different than the typical heart we got to look at alongside it.

For me, it was such a moment of gratitude and wonder, to see that heart and how hard it had worked. The scars all over it were evidence of just how much has to be done to these single ventricle hearts to get them to function. For Bodie, I think it was very cathartic, not just to say goodbye to his heart, but to realize exactly how bad his heart was. It wasn’t enlarged as a heart in end stage heart failure would be. But as Bodie said, it looked “well seasoned” with so many scars. It truly looked like someone had MacGyvered it to get it to work, like they just grabbed whatever they had on hand at the time. It was kind of overwhelming to see it and really take it in. But overwhelming in a wonderful way.

If you’re not squeamish and would like to see a little of what we experienced (Bodie and I were there in person and Dusk and Sierra were able to Facetime in), check out the video I put together:

Stanford is calling…and we must go

One thing we have learned unequivocally in Bodie’s heart journey is that when the hospital calls, we go…we drop everything and go…

Bodie’s team at Stanford has been nervously watching his weekly labs taken in San Diego, waiting to see if his platelets would stabilize so that we could move forward with his annual monitoring (which is now almost 3 months overdue). Unfortunately, we seem to have found the one thing in the world more stubborn than our son – his platelets!

His platelets ARE in a better range, but still bouncing around like they’re on the world’s most fun roller coaster. In the last 5 draws, they’ve been 27K, 70K, 23K, 100K and 79K. As a reminder, he needs to consistently be above 50K to even consider doing a cath and biopsy.

Because we’re already 3 months past when we were supposed to do these procedures, Bodie’s team is getting understandably nervous about wanting to see what’s going on inside his heart.

It’s not safe to do a cath and biopsy (which is more or less the gold standard of transplant monitoring). But his team doesn’t want to wait any longer to see what’s going on. So they’ve put together a less invasive monitoring plan, which includes a CT scan, Allosure Heart mapping and bloodwork, along with a multi-disciplinary clinic visit, EKG and echocardiogram.

All of this is designed to get us as comfortable we can safely get under our current circumstances. with Bodie’s heart, with a plan to follow up with a cath once we can safely do so. There are things we WILL NOT be able to do with a CT scan, like getting a good look at his coronary arteries and being able to biopsy his heart tissue.

It’s not perfect.

But it’s what we got.

So Bodie and I are headed up to Palo Alto for a couple of days of testing and appointments.

Please keep Bodie in your prayers:

1. Pray for his heart. Please pray that they see NO signs of rejection with this special heart. Bodie looks SO good from the outside these days – please pray that he looks as good on the inside as he does on the outside.
2. Pray for a clear path ahead. Given Bodie’s platelet situation, we’ve sort of been in limbo, treating the platelets but still not having a clear indicator (1) what is actually causing the issue, (2) what our long term treatment plan will be, and (3) how soon we can do a full cath and biopsy. Please pray we get more clear answers over the next few days.
3. Pray for Bodie’s spirit. He’s been pretty bummed to be back at school and already facing missing classes for medical appointments and procedures. (As a point of clarification, he is NOT sad about missing school – this kid does not like school! – he’s sad about constantly being behind in his schoolwork because of it.) Last year was a VERY hard fought battle for him, and left him discouraged toward school. Please pray for him to focus on the positives and how much better he feels.
4. Pray for smoother sailing. Bodie’s had a bit of a rough go of things in the first year post transplant. We covet smoother days ahead with fewer procedures and appointments, so that he can get to what 15 year old boys love to do – game and hang out with his friends!

Thanks for all of your support and prayers!a